Wednesday, April 09, 2008

Stayin' Alive...

Ah, ah, ah, ah, stayin' a-LIE HIGH E I E IVE...Oh, brings back such memories...but I digress as usual.

Yes, I AM staying alive following my Tysabri infusion yesterday...I'm sure much to the chagrin of Dr. She Who Will Not Be Named (who I secretly believe HAS tried to kill me in the past!). My infusion went off without a hitch, which was the good part. I had a friend with me, who is also named as my Power Of Attorney on my Health Care Advanced Directive...I instructed her, first signs of hives or difficulty breathing, she needed to jump up and move the exam table in front of the door and not let anyone in...I've lived a good life...no need to resuscitate me BACK from the dead and be warehoused in a "facility"! LOL Actually, she really WAS there just in case something "went wrong", but not necessarily there to assist in my demise. I realized after my stupor last time following my 4th Tysabri infusion, I might NEED someone there to speak for me if I couldn't. Fortunately, my OWN tongue never stopped flapping the entire time I was there. :-)

I don't recall Tysabri giving me such a headache, stiff neck, and joint pain like I am having today. I've been taking Ibuprofen with some relief, but still feeling fairly miserable...Dr. SWWNBN doesn't seem too concerned about my current plight, so I assume this, too, shall pass. I'm really very tired, but I can't even blame all of THAT on Tysabri either...having worked two over night shifts this week "could" also be feeding the frenzied fatigue monster. Time will tell...

I don't have much else to report and really should go back to bed to rest...I just wanted to leave an update here and to say THANK YOU for ALL of the wonderful well-wishes and messages left here from all y'all! Your kindness always uplifts me...it is such a great blessing to know there are many of you sending lots of positive energy my way...many of you in far worse situations than mine and still, you wish me well.

Thank you, peeps...I imagine I'll be "STAYIN' ALIVE" for some time to come...

I took your blog to an MS Support Group meeting for Show-and-Tell. Someone said, "do you know anyone who is on tysabri?" and I said, "well, as a matter of fact..." There were quite a few chuckles as people browsed your site.

Survivor MS

HAWAII 2014 PARASAIL

EMAIL:

LOCATION:

Seattle, WA, USA

AGE & OTHER TRIVIA:

53/female/Leo

DIAGNOSIS:

Relapsing & Remitting Multiple Sclerosis--Diagnosed 04/15/2003--(because having to pay taxes that day just wasn't enough!)

MEDICATIONS:

I have taken Copaxone, Avonex, IVIg, Tysabri, and 5 doses of Novantrone in 2007. I also participated in a Rituxan Study in 2005-2006. In the fall of 2007, while still on Novantrone, I began having "break through" symptoms, which became more and more frequent. In March 2008, I had an MRI that showed many enhancing lesions--Novantrone was no longer effective. Tysabri had been discontinued in November 2006, due to a questionable "anaphylactoid reaction". I received my first restart dose of Tysabri on April 8th, 2008, without experiencing ANY allergic response...I completed 9 doses of Tysabri in 2008, but continued to have some relapsing symptoms. I have, since December 2008, stopped all Disease Modifying medications and feel great...but don't tell my neurologist!